Staring at the fish-filled wallpaper in the children’s outpatients waiting room today, I was reminded of a quote from Dory in Finding Nemo (which I know shouldn’t be one of the favourite films of a man my age but it is, okay, it just is) – “When life gets you down, do you wanna know what you gotta do? Just keep swimming”.
That’s been our approach to life pretty much since the day we were told the devastating news that our daughter Zoe had a life-threatening heart condition.
Many folks over the years have asked how we coped with the diagnosis; the all-day surgery; the times we nearly lost her. My answer is always the same – we had to, so we just did. We just kept swimming.
Now, nine and a half years since her birth, and surgery, we’re back at the hospital that stitched up her broken heart – this time for her regular MOT: a scan and check-over to make sure everything is ticking over nicely.
Zoe was given a big thumbs up today – she’s doing well and no further heart operations are on the horizon.
We were so lucky. Which seems an odd thing to say when you’ve seen doctors battling to save your daughter’s life right in front of your eyes; when you’ve seen your daughter’s chest cut open; when you’ve spent weeks watching your tiny baby hooked up to machines that are keeping her alive.
But we were lucky. Zoe’s condition was spotted during my wife’s pregnancy, and treatment began early. When she fell really unwell, we were already in hospital and a plan for surgery swiftly followed.
While it felt the absolute opposite of it at the time, we were lucky that day when the sonographer spotted something that didn’t look right. Lucky that her surgery was so successful; lucky that her repair is holding firm as she grows.
Lucky on the day of our 20 week scan, and grateful every day since.
Of course, Tiny Tickers is trying to take luck out of it. Our work training sonographers; campaigning for improved standards; supporting families; and spreading awareness is all aimed delivering our vision – that every baby with a serious heart condition is detected and treated at the first opportunity. Every baby.
And, with your support, we’re doing just that. While waiting for Zoe’s appointment today, I was told of a referral from a sonographer who had received our training. They’d thought they’d spotted a defect during a 20 week scan, and they were right – that’s one more baby spotted who might have been missed. That’s the impact of your support, and we’re all so grateful for it.
Having a child with a heart condition is a hell of a journey. Sometimes you feel like you’re battling the tide – swimming for all your worth but getting swept along in the wrong direction. But, for the lucky ones among us, there are also days when the sea is calm and flat – days when you still need to keep swimming, but you can do a bit of floating and can take the time to look back to see how far you’ve come.
To all the heart mums and dads out there – just keep swimming.
Jon Arnold, Tiny Tickers Chief Executive